Families help shape SCID Compass Family Planning Guide

On the front page of the SCID Compass Family Planning Guide, there is a quote by a mother of five children, including one child diagnosed with severe combined immunodeficiency (SCID). It reads, “Don’t let other people who don’t know what’s going on in your life and in your medical lives, hinder your thought process on whether or not to have children.”

Of all the quotes gathered by Expecting Health’s Manager of Newborn Screening Initiatives Brianne Miller, this one stands out as the overarching message that she and her colleagues wanted to convey when they assembled the SCID Compass Family Planning Guide.

“I think that is the perfect quote to encapsulate all of the advice that the parents gave us during their interviews. You know what’s best for your family and don’t let others discourage you from doing that,” said Miller.

The parent interviews to which Miller refers serve as the backbone for the information contained in the SCID Compass Family Planning Guide, a two-page downloadable document that provides parents with details concerning their options for building their family after they’ve had a child diagnosed with SCID.

Miller recently described the process of developing the guide during a presentation, “Beyond the Newborn Screen: Family Planning After Having a Child with SCID”. The SCID Compass Family Planning Guide is a joint project of SCID Compass and its partners, including Expecting Health and the nine parents who gave of their time and experiences to inform the guide.

“There’s not a lot known about what happens after newborn screening. You go through the newborn screening process but the support kind of falls off after that point,” said Miller. “What happens when you want to have another child? What does that mean for you and your family? We really wanted to look into what happens next.”

In order to identify and address resource gaps, Expecting Health asked the parents questions pertaining to:

• Their family journey with SCID diagnosis and treatment

• Their family planning experiences

• Their experiences with social support, genetic services, in vitro fertilization (IVF), and other aspects of family planning

• Where families found support and resources, and what they felt was missing

Parents interviewed represented the entire range of the family planning timeline, from a family who was planning their next child after SCID, to a mother who was expecting, to families who had additional children after a SCID diagnosis, to families that were complete. A few of the family planning paths included natural conception, IVF, and adoption.

“What did we learn? We learned a lot,” said Miller.

First, the team gleaned that each family’s experience with SCID is different. Some families had children diagnosed with SCID through newborn screening, and others did not. Some had a smooth diagnosis, treatment, and recovery, while others said their child struggled on life support after a SCID diagnosis. Some mothers not only stressed about their child’s SCID diagnosis but also felt tremendous guilt as they grappled with their own diagnosis as a carrier.

Secondly, the team learned that a family weighs many factors when deciding whether or not to have additional children. Some parents of children who had good health after treatment wanted more children, while those who experienced the medical trauma of almost losing their child were more hesitant. Financial considerations also affected families. IVF is often not covered by insurance, nor is adoption. One parent worried that if they chose IVF, which would allow them to have a child without SCID, their child with SCID would feel lesser.

“A lot of heavy and complex thoughts and feelings went into these family planning decisions,” said Miller.

Finally, the interview team discovered a significant lack of social, financial, and educational support in terms of family planning and resources for parents of children with SCID should they choose to have another child.

“People want to be able to make the choice that’s right for them. And it just seems like there’s not really a lot of support in that area,” said Miller.

Once Expecting Health synthesized the data contained in the interviews, they created the SCID Compass Family Planning Guide. The front page of the guide recommends that parents:

• Understand the type of SCID diagnosed in their child

• Know if either parent is a carrier of SCID

• Explore all family planning possibilities including:

  • Not expanding your family

  • Choosing to have additional birth children through natural conception or in vitro fertilization

  • Building your family through adoption

The back page of the SCID Compass Family Planning Guide assists parents in the decision process by providing a worksheet. The worksheet prompts parents to discuss answers to questions like:

• What are your family’s greatest strengths?

• What are your family’s top health priorities?

• What do you envision your family to look like in five years?

“We’re really guiding families to think through these things but not making them seem like they are the end-all-be-all or that any factor is more important than another because everybody’s factors are different,” said Miller.

Watch “Beyond the Newborn Screen: Family Planning After Having a Child With SCID.”

Download “SCID Compass Family Planning Guide.”